The Forgotten Color in the Rainbow

I care about marriage equality.

I posted stuff about it on Facebook, even changed my profile photo. I did everything that was happening, as it was happening. I did this in part to be an ally to my friends who are gay and also, to be honest, because I’m old fashioned. I did it because I believe in marriage.

I did it because I want my kids to marry. I mean, when the time is right for them, I want them to settle down with ONE PERSON and grow deep roots with that ONE PERSON. And that desire of mine for them does not change according to who they are attracted to. If Micah or Mack want to marry men, that’s fine with me but I want them to be MARRIED.

I feel the same way about Moxie – when she decides the time is right for herself, I don’t care if she wants to marry a woman; I just want her MARRIED.*

But this is the thing: Moxie and most others with Down syndrome can’t marry without being penalized by their disability benefits. And most people who need the safety net that disability benefits bring, really do need those benefits. That net is absolutely crucial and I cannot state that strongly enough.

If they get legally married, their income will be halved, and disability benefits are already below the poverty level. There is no way a couple could live on half. So there are these pretend marriages in the Down syndrome and disability communities, and more often than not, people just live together.

So yesterday, I cried.

I cried so fricking hard, all day, every time I opened Facebook, every time I thought about it. I cried for joy for equality, I cried that justice has been seen to. I cried because this has been a hell of a long wait, a lifetime of struggle for so many people. I cried because I’m proud of my country.

I cried because it’s now absolutely fair of me to expect all of my children to marry, whatever their sexual preference may be.

Except one.

And I cried some more.

This victory will be perfect and complete only when we are ALL afforded equal rights and opportunities with marriage, when people with disabilities no longer face a marriage penalty with their benefits.

* This is with everything understood of course, that marriage is the most important official connection to another human being you can make – it is not something to be done for the sake of doing it. It’s to be done because you have met the person you want to grow old with, you are physically, mentally and spiritually attracted to. ://end sermon

14 Comments

This is sad, should get better. We have this compulsory ensurance for health and care here and a small but helpful income for those who cannot earn enough money, for what reasons ever. And additional support for people with disabilities- not depending on marital status. Of course – married means also responsibility, also financially. But the basic support by state stays. I am really thankful for this.

I think that someone needs to challenge this law in court. With the recent court decision granting marriage equality and the rights under ADA, someone would likely win (although I am not an attorney) this case denying benefits just because they are married. I think it is pathetic that this occurs and would likely be overturned. I would contact a civil rights attorney. Perhaps the ACLU, Protection & Advocacy, Disability Rights Advocates, or another non-profit, civil rights firm would be willing to take such a case.

Another avenue Moxie could pursue is to marry someone middle class and use her talent to earn a livable wage. Yes, she may have to pay for some of her supports herself or may lose SSI or SSDI. SSI and SSDI may decrease but if Moxie has a talent she could learn a livable wage.

She could also move to a state that doesn’t cut off their rehab and regional center supports when they marry (such as California for example, and I think there are others out there). Having a romantic partner as a natural support pay cost the state less than having to pay supports or a group home, plus the relationship could be a very positive thing for her.

and yes, if Moxie married someone with their own income and she worked. I would think she’d want to work anyway, but I do think there should be a safety net for her, in the form of SSI. It’s not much, but it’s something – and it comes with health benefits which are critical (although I wonder how that is going to change now with Obamacare?)

But even if she is taken care of, I know I won’t be satisfied, knowing that so many others are not.

Usually though that is set in place to keep someone from taking advantage of your child. I am not saying i agree with it but that is why that law was made. When my son turned 18 we chose power of attorney over his finances and medical decisions but left it where he could still make some choices himself. But we have been advised by his teacher we may need to seek more contol as a safety precausion for him. I still haven’t decided if that is what i want to do.

Although I am super excited about the Supreme Court ruling, I also know that it’s not “full” marriage equality until people with disabilities are included as well. Historically, there were many laws passed to deny people with disabilities, especially intellectual disabilities and genetic disabilities, the right to marry. This fact sometimes gets lost in other marriage equality topics.

There is another part to this puzzle also. If you marry and you are both disabled -my situation- you cannot be each others PCA (personal care attendant) and get paid for it. Massachusetts is just staring to address this – house bill 70.

I totally agree with you, disabled people have been getting the short end of the stick for far too long. And all because they’re disabled?? How does that make sense to anyone?? As far as I see it, disability is enough of a challenge. Piling on struggling to survive on an income that is on the poverty scale, now that is just cruel, unusual, and undeserved punishment! And it’s time the government gets a clue, and changes the law. It’s time to stop treating disabled people like they’re second-class citizens. The Constitution says we’re all equal, how about making the words real??